Parent to Parent

(2/2) “For three years now, Cash has been attending Ko Taku Reo, the Deaf provision here in Wellington. He is in a small classroom of about six hard-of-hearing children.

“I instantly saw his progression at the new school through his determination to teach everyone NZSL at home. Before he went to Ko Taku Reo, he kept to himself a lot. His siblings would try to sign with him, and he would push them away. He didn't want any of it. I think being amongst children who were in the same situation as him and who shared the same language gave him that boost of confidence to use it everywhere.

“Outside of school, we have the support of the Wellington Deaf Club. They hold events almost every month. Whenever he comes home from school, his teacher has told him about some class or event. And he'll be, ‘Yep, the whole family has to go!’ So he’s got activities and a whole community outside the classroom, too. It’s also where we meet parents of Deaf children and Deaf adults. It's a great community of people here in Wellington. We're so grateful that we get to be a part of it.

“We really hope our story helps other parents, especially Pacific Island parents. We have so many new resources available to us, and I think it’s a cultural thing, not to ask questions and access these resources—a fear of the unknown. We can be too comfortable in our own culture to look into anything new. It’s like dementia; you don’t know what it is until you go out and research it.

“That was why I wanted to share our experiences with Parent to Parent: to show others that they are not alone and if they do get stuck, they can reach out—there’s a whole community out there—and there’s no right or wrong way of doing things; it’s what works for you as a family.

“My hope for the future is that they live life to the full. Because they have this ability (I don't like to call it a disability)—a talent for communicating in a different language—I don't want it to stop them from doing anything. YOLO! We are so fortunate that our kids have access to this wonderful language, to be able to be themselves and express themselves. That’s what’s important to us. If I could sum up what NZSL means to us in three words, it would be life, unity, love.” Ruby and Pen

Parent to Parent We believe in the value of families supporting families when experiencing the unique joy and challeng

(1/2) “I’m of Samoan heritage and was born and raised in Wellington, and my husband, Pen, was born and raised in Napier. We have six children and two dogs, and we also care for my mum full time, who has dementia.

“Cadence is our eldest daughter and has partial hearing. This is Cash, our second child, who has profound hearing loss but also has cochlear implants. NZSL has taken us to a great place we never expected to be a few years back—and we know other parents may be lost out there right now—so we thought we’d share our story.

“With Cadence, we found out about her hearing at the newborn screening tests. She failed them three times before they referred us to the Kenepuru ENT, where she got hearing aids. It was totally different with Cash—the way we found out and the solutions we came to—a whole new path of emotions.

“He had passed all those newborn screening tests fine. It wasn't until we noticed that he wasn't making any more noises when he laughed that we worried; there were no more giggles, and he wasn't speaking. We had Cadence to compare him to—she was babbling before 12 months and onwards, whereas he stopped at around 1 year old.

“Our GP referred us to a specialist. Because of Cadence, they thought it could be hearing loss and genetic. But after testing, they came to the conclusion that he had lost his hearing between nine and 12 months.

“I feel very emotional talking about it. For me, it became a self-blaming game with Cash, as he had had access to hearing at one stage. Then he lost it, and I was left with questions like, ‘What did I do wrong?’

“The professionals were very helpful. ENT directed us to where and who we needed to see, and the Adviser on deaf children, Rachel, came through this whole journey with us: getting hearing aids, having First Signs come to our home, coming with us to appointments, and through the Southern Cochlear Implant Programme.

“We were referred for implants because his ears weren't actually working, so there was no point in using hearing aids. He got his cochlears when he was 3-4 years old but has only used them consistently for about six months since.

“He didn't like it; it was too overwhelming. We knew he might react negatively because of the amount of time he'd had without hearing. Cash knows they're there, and sometimes I’ll show him them and say, ‘Do you want these on today?’ And he'll just say, ‘No.’ That’s where we’re at, at the moment.

“Pen didn't want him to get implants, but I did, even though we knew that he might not want to wear them. I was thinking of his future and him having the option either way. Because they can change their minds later, can’t they? That was the whole push for me.

“It was hard for us as parents to have those different viewpoints, and my husband had support from my parents as well. I guess being Pacific Islanders, our culture plays a big part in why they felt the way they did. My parents saw the risk of him having to undergo surgery to have the cochlears and had a lack of trust in that process.

“It was Rachel who initially advised us on using NZSL. She made a whole portfolio of first signs to stick around our house and would come over to sign with us as a family before introducing us to First Signs, through Deaf Aotearoa. They come into the home and really push your learning of NZSL. At first, it was hard to learn, but now Cash is our family’s fluent, determined and incredible teacher.” Ruby

“The best thing about NZSL is just communicating naturally and spontaneously with Cash—having regular convos with him. Since studying it at school, he's come along in leaps and bounds, leaving me behind. We know some, but he's really advanced. I'm trying to catch up!” Pen

Join Parent to Parent's National President Frian Wadia and the NEGL leadership group for this Facebook live EGL event from 5:00pm to 6:00pm tomorrow! Please share with friends and families who may be interested.

Live Date: May 2nd

In this latest update, Whaikaha reinstates some flexibility to purchase certain self-regulation items and the existing support for courses of study/therapy/programmes committed to before March 2018 (where the disabled person relied on the flexibility under the previous Purchase Rules to support their participation in those commitments). Read more here:

Clarifications on Purchasing Rules for Flexible Funding | Whaikaha - Ministry of Disabled People Whaikaha – Ministry of Disabled People is providing clarifications to support disabled people, tāngata whaikaha Māori and whānau to apply the Purchasing Rules for flexible funding supports. 

Many thanks to our fantastic funders Spectrum Foundation for supporting our workshops 💙🧡💛

This is Frian.

Her three boys know her as ‘mum’.

But to many Kiwi parents with disabled children, she’s a superhero.

Frian runs Parent to Parent's free ‘Building a Good Life’ workshops, with help from Spectrum Foundation funding. The workshops help parents get to know their child’s rights in education spaces. That means helping them understand what funding is available, how to help build an Individual Education Plan (IEP) for their child, and how to ensure their child has access to the support they need.

Frian’s experience is hard-earned. She has learned how to navigate the system with each of her sons. When she shares that experience, it can be life-changing for children and their whānau.

“I learned so much from her. I finally felt like I knew what my son was entitled to, and how to go about accessing that support,” says mum Nirishma.

Frian hopes all whānau members attending the workshop have a similar experience to Nirishma.

“After the workshops, I hear many parents tell me how much more confident they are at navigating their child’s situation. They have information and understanding they didn’t have before”, she says.

Nirishma’s son Ayaan has just started intermediate school. While Nirishma still finds it challenging to navigate the system, her understanding means she can be the most effective advocate possible for her son.

Spectrum Foundation is a proud funder of Parent to Parent’s ‘Building a Good Life’ workshops, supporting disabled children and their whānau to have equal access to a good education.

To learn more about the workshops, visit www.parent2parent.org.nz.

Yesterday Whaikaha – Ministry of Disabled People announced changes to the Purchasing Guidelines and Equipment and Modification Services (EMS). The changes to the Purchasing Rules impact how disabled people, and their families can use flexible funding options - Carer Support, Individualised Funding, Enhanced Individualised Funding, Choice in Community Living and EGL Personal Budgets.
You can find the detail of the new guidelines here: https://tinyurl.com/5nkvzxsb

These changes have come as a shock to our community, and we understand the concern and distress that many people are feeling right now. Parent to Parent is working with other groups and organisations in the sector to continue to advocate for all of those affected by these changes.

If you would like to share your concerns, we invite you to share your feedback via the following channels:

Carers NZ survey: https://tinyurl.com/yydyy65t

Carers Alliance Parliamentary petition: https://tinyurl.com/5ea7wjyz

Awhi Ngā Mātua feedback form: https://tinyurl.com/4vtms8mf

We are still gathering information as to how these changes will affect disabled people and their families and will ensure to keep you updated with any further changes/information as and when we are aware of them.

Together we are stronger!

Update: Thank you everyone for your feedback. We are sorry that we were not able to give the community more notice of these changes. We are carefully considering the comments and feedback provided in this chat. We will respond to questions as quickly as possible, and also work to provide additional information to our community on what these changes mean for you.

Changes to Purchasing Rules and Equipment and Modification Services.

Purchasing Rules:
We have made changes to the Purchasing Rules to clarify how people can use their disability support funding. Purchasing Rules describe what disability support funding can be used to buy, when using Individualised Funding, Enhanced Individualised Funding, Choice in Community Living, Personal Budgets or Carer Support.

These changes do not affect the amount of funding you are allocated.

Equipment and Modification Services (EMS):
Whaikaha is working with equipment and modification assessors and providers to put in place prioritisation measures. This means that people with the most urgent need will be prioritised for Equipment or Modification Services.

Why are these changes happening?
Whaikaha commissions disability support services for almost 50,000 people and funds equipment and home and vehicle modifications for approximately 100,000 people through Equipment and Modification Services (EMS). There is increasing pressure across the disability support system in both the demand for, and cost of these services and supports.

You can find out information about the changes on our website: https://bit.ly/3TjFdIl

Image description: purple background with pale yellow text that says, "Changes to Purchasing Rules and EMS”. The top left corner has a faded tohu design, a series of parallel lines with intersecting curved elements.

On , we’d like to recognise the unique challenges and joys of growing up with a disabled or neurodivergent sibling, and spread the word about our SibSupportNZ programme, which brings these children together. And who better to tell you about it than one of our attendees?

“I am nine years old, and I have a sister who is 11 years old, nearly two years older than me. The most interesting thing about me is that I like to dance; I do tap and contemporary. I am best at dancing and sport. I play hockey—I can score goals and defend, too. I used to play netball—all of the positions.

“My sister is best at writing. She has a talent for reading and writing, but I’m not sure what kind of things she likes to write. She reads Jacqueline Wilson and the Baby-Sitter’s Club series. I like Harry Potter, my favourite is The Deathly Hallows, the movie too. My sister loves Dua Lipa, it’s probably the most and least interesting about her because she can go on about Dua Lipa a bit much. She knows all the lyrics to her songs; I don’t know how she got so into her.

“The best thing my sister has ever done for me is teach me to read. That’s pretty special. I’m not sure how she did it as she isn’t very patient. She sometimes makes me laugh too, like when she spilled her food that she was eating on the ground, that made me laugh! I don’t think I’ve taught my sister anything, but I help her find things, like her hairbrush and her cardigan. I also help her up the steps outside our house. When my sister’s not around, I feel happy because I don’t have to worry about her. I’ve never been apart from her for a long time, so I’ve never really had the chance to miss her.

“I had a great day last Saturday at the SibShop. I enjoyed the laser tag most because I like sports. I only got 19 people, some people got a hundred and they weren’t even older than me. At the end of the day, I felt sad because I wanted to keep going—I was having such a good time—I didn’t want it to stop. I’d definitely go again. Other activities I’d like to do are ice skating or rock climbing. I’m not a great ice skater, but it would be good to learn.” Lucy

Our by-siblings-for-siblings support groups (ages 8-18) are judgment-free spaces to make friends with others in a similar situation, offload stress, and be a carefree kid.

Run by trained SibLeaders who themselves have a disabled or neurodivergent sibling, our weekend SibCamps and one-day SibShops are packed with games and activities, plus the chance for some serious chat. And did we mention, parents get some time off too?

Please join us in celebrating our amazing siblings and share this service with other parents who may have a child who could benefit, or sign up for our newsletter to hear about events happening in your area.

https://parent2parent.org.nz/how-we-help/sibsupport-nz/



Photo taken after last Saturday’s SibShop in

“One year on and it’s raw. It’s still raw here. Some places were untouched, some were battered, and other places were just annihilated. Eskdale is just gone, completely gone. We live five minutes away from Pakowhai; there’s a large river there, which turned into a raging torrent. It washed the whole community away.

“Hawke’s Bay wasn’t really on the radar to start off with. They said we were going to get the side of the cyclone and we’d get heavy rain. We do get some flooding here normally, so everyone was expecting the usual: parts of Napier to flood, and then by the next day, it’s gone through runoff, and everyone’s back to normal within a few days. They said it was going to come across the North Island and head up the coast to Gisborne. So Gisborne and Wairoa were on watch, but we weren’t, and there was not enough warning at all.

“I first realised it could be a lot worse than anyone was expecting on the Monday night, February 12th. I was staying with my daughter in the children’s ward of the hospital, and my partner and youngest son had come to visit. Afterwards, I walked them out the front; it was raining and very windy. My son popped his umbrella up, and a gust of wind picked him up—caught the umbrella like Mary Poppins—he tells people he had a Mary Poppins experience. He was thrown back about a metre in the air. My partner ran; there was a man on crutches who also ran (he had just had surgery on his leg but was very quick on those crutches!). My partner caught him mid-flight. If he hadn’t caught him, he would have been slammed into the side of the hospital building. It was scary. That’s when I thought, wow, I’ve never seen wind like that. This is going to be bad.

“During the night, I knew it was serious because the helicopters started coming. Maybe every 10 minutes I heard a helicopter flying in. They’d be there a few minutes and fly back out, then the next would fly in. In the middle of the night, there was a little tap on the door. It was a nurse who asked if I could help out, as she knew I supported the disabled community in my role at Parent to Parent. I was already awake—freaked out by the helicopters—so I got up, and the end of the hospital was flooded. I started to help mop up the water and put towels down. Then I prepared towels and pyjamas ready for people coming in…” Jill Fallowfield, Parent to Parent Regional Coordinator for Hawke’s Bay

Read more of Jill’s on-the-ground account of when Cyclone Gabrielle hit and the grassroots community response here: https://parent2parent.org.nz/news/cyclone-gabrielle-one-year-on/

Parent to Parent We believe in the value of families supporting families when experiencing the unique joy and challeng

This February 29th, we’re taking a positive leap into the new school year!

Check out our Individual Education Plan (IEP) resource with lots of tips to empower families—whether you are new to the process, seasoned campaigners, or anywhere in between.

This booklet covers all the basics of IEPs, from what they are and who might need one, to details about the process, tips on the IEP meeting and follow-up, example goals, and strengths-based language. A mana-enhancing overview for families and schools alike.

Happy Leap Day!

*This is a Care Matters resource brought to you by Parent to Parent

https://parent2parent.org.nz/resource-hub/individual-education-plan/

Individual Education Plan - Parent to Parent Individual Education Plan

Can you help? We’re supporting a mum of a 3.5-year-old daughter who is looking for other families with children who have been diagnosed with a rare genetic mutation on KIF11 gene causing microcephaly, vision problems and developmental delay. Please share far and wide to help us find a connection.

Can you help? We're supporting a mum of a 16-year-old daughter who would like to connect with another parent of a child around the same age who has Dysdiadochokinesia. Please share far and wide to help us find a connection.

Wishing everyone a fun-filled day of festivities! Here at Parent to Parent, we've had a few months of celebration practice, with our 40th Anniversary Events happening across the regions.

They have been a fantastic opportunity to connect and reflect on how far we’ve come over the last 40 years and what more can be done to create a fully inclusive and accessible society. There’s also been a whole heap of laughter, cake, ruby anniversary-themed activities, a spirit of togetherness... and hope for the future.

Please join us in celebrating this special day in a similar way, to raise awareness about disability issues.

Image taken at our Nelson Anniversary Event.

Find out more about Parent to Parent's support services here: https://parent2parent.org.nz

How do I know if my local voting place is accessible? To find your nearest accessible voting place, tick 'Fully accessible voting places only' at the bottom of the Electoral Commission's 'Find a voting place' webpage.

https://vote.nz/2023-general-election/how-to-vote/find-a-voting-place/?utm_source=substack&utm_medium=email

Find a voting place Find a voting place near you. You can find voting places on a map or look them up in a list.

Do you have any plans for today? One simple, quick way to support parents and whānau raising a disabled, neurodivergent, or health-impaired family member is to share this helpful resource—link below.*

Parent to Parent is a charity that offers lifelong support for Kiwi families raising children with any disability, neurodiversity, or health impairment. One of the most common challenges families face across disabilities is seeking the best educational outcomes for our children.

Are you worried your child's rights or best interests aren't front and centre at school? Five Top Tips for Advocating for Your Child's Right to Education is an easy-to-read, six-page handbook to empower you in communications with your child's educators.

We appreciate your support! With your help, we can reach more families.

https://bit.ly/3sEKelf

*This is a Care Matters Resource brought to you by Parent to Parent

Parent to Parent - Lifelong support for families across NZ We can inform, educate, inspire and support you as you navigate your way through your family’s experience with disability.

“It’s not common, but it's more common than you think for someone to have a sibling with a disability. You just sometimes don't even realise it. So my brother: he’s on the autism spectrum. He functions pretty well in the world and people don't see that it can be a real struggle for him—it’s not obvious from the outside. Which can be worse as well.

“He used to get made fun of a lot because his voice was very deep from a really young age. But he always stood up for himself. So that was good. He can also over stare and make people feel uncomfortable. But that’s all just part of who he is. If my friends come over and say ‘Oh, he’s staring at us, it’s creepy,’ I’m like, ‘It’s just what he does. You know, this is him. Deal with it.’

“Before, when I was younger, I would say, ‘Stop staring!’ to him. Mum sat down with me and explained that you will get people—your friends—who understand that it is what it is. It's probably easier for you to explain it to them before it becomes a bigger issue than it needs to be.

“Now, if I see that someone who comes over is feeling uncomfortable, I just explain. If they don't like it, they might just not have to come around. I feel like if they don't get my brother—if they don't understand after I’ve explained it, it’s their issue; he can't help it, you know? I’m never embarrassed anymore.

“We have a strong bond even though we never set out to look out for each other. Sometimes Mum finds it hard to understand what he’s saying when he mumbles. And I’ll know exactly what he’s said and translate, ‘He said – blah blah…’ Mum will ask, ‘How did you get that?’ But I just know.

“One of the issues facing youth who have a disabled or neurodiverse sibling is that when families do stuff, they have to cater it towards one sibling’s needs more than the other, but it’s just how it is, I guess. That’s one reason why the SibSupport programme is so good. It’s nice getting to know lots of people with similar life experiences. Not many people I meet otherwise know what it's like, and then it’s hard to talk about it because they don’t understand. I volunteer on the programme now and help out with the younger siblings.

“At the moment my brother and I hardly speak, Mum says it’s just a teenage phase. But being with each other is quite comforting. Because we're so used to each other's presence, we don't have to actually speak. It's just a safe place for us. Yeah…” Katie

⭐ On International Youth Day, please join us in recognising inspirational youth like Katie, who share their experiences to let others know there are people who 'get it'. ⭐



Find out more about Parent to Parent’s SibSupport services here: https://parent2parent.org.nz/how-we-help/sibsupport-nz/

Isn’t it great to find someone who just ‘gets it’?

There’s nothing quite like it 😊, but it can be hard for children who are growing up with a disabled or neurodiverse sibling to find that connection. Today, we’d like to recognise the unique challenges and joys of growing up with a disabled brother or sister, and spread the word about our SibSupport NZ programme, which brings these kids and teens together.

We know that having a sibling who has a disability can feel isolating. So, our by-siblings-for-siblings support groups (ages 8-18) are judgement-free spaces to make friends with others in a similar situation, offload stress, and be a carefree kid.

Run by trained SibLeaders who themselves have a sibling with a disability, our weekend SibCamps and one-day SibShops are packed with games and activities, and the chance for some serious chat. Even after a short time together, friends are made, feelings shared and siblings leave with both their confidence and circle of support strengthened. And did we mention, parents get some time off too?

Please join us in celebrating our amazing siblings, and share this service with other parents who may have a child who could benefit, or sign up for our newsletter to hear about events happening in your area.

https://parent2parent.org.nz/how-we-help/sibsupport-nz/



Photo taken at yesterday’s SibShop in Coastal Bay of Plenty.

Check out the new changes to the carer support subsidy! The minimum daily rate is now $80 nationwide for parity across regions, and the greater flexibility means families will have more choice and control over how they use this support. A great example of Enabling Good Lives (EGL) principles in action.

Kathleen, one of our Parent to Parent mums, had this to say about the changes:

"I’m grateful that the uplift addresses regional differences for carers nationally. We already have the $80 rate in our region, but it shouldn’t be a postcode lottery who gets the higher amount. I’m rejoicing for fellow carers in other regions, who now have the same.

“The flexibility within these changes also helps families to overcome some of the systemic barriers they faced previously. What respite looks like for one person is not the same as for the next; everyone is different. The wider options on how the payment can be used mean more freedom of choice for families in getting the respite support they need. Great news!"



https://www.1news.co.nz/2023/06/29/carer-subsidies-now-fairer-for-everybody-advocates/?fbclid=IwAR1pe9KxiTHZfHxZbuYY4bCsZ9G_jsTrU2hXHMwJuukopaNY3FtT9AS361c_aem_Ae-bN_iflsBkVrj9D2j5z5x8MZuMzeJN32zbyLRHoJqLywZI4CZzWLwpRyrSzh8sYvI

Carer subsidies now 'fairer for everybody' - advocates The Government's increased the minimum daily subsidy rate family carers can access from Te Whatu Ora, from $64.50 in some regions to a minimum of $80 per day nationwide.